Dem Bones, Dem Bones, Dem Dry Bones

By Dave R.

August 31, 2012

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You know whatever they say about 50 being the new 40 and 60 being the new 50, well that's all fine and dandy for the super-fit, senior gym bunny, but if you're HIV positive it can be a very different matter, or at least in my case! From my point of view, 50 was the new 60 and 60 was the new 70 and now every new birthday seems to increase in dog years.

You've probably seen those Dr. Oz programmes where he puts his clearly unhealthy victims onto a sort of "truth scale" and then shocks them and the audience by revealing their body's real age. Wild horses wouldn't get me onto that sort of programme! It's partly the neuropathy that dogs my life; partly the results of 35 years of smoking (stopped since 2007); partly the results of the virus and its treatment and general creaking old age. Together, I know what my body's real age is and there's no turning back the clock now.

One of my problems is decreased bone mineral density and this can be a complication for many people living with HIV. In fact estimates vary wildly but anything between 15% and 69% of people living with HIV are losing bone density as the years go on. As with many of these things, studies have only been recently done as the science world has realised that HIV-positive people are living much longer than was at first expected. It's nice to know we're a fascinating, new study demographic! It turns out that we're more susceptible to bone fractures, mainly thanks to falls. These logically occur most in the vertebrae, hips, or wrists and compared to the rest of the population, we have a 30% to 70% increased chance of this happening. The statistics again show a huge differentiation but not surprising if neuropathy and osteoporosis are really on the increase.

So why have people living with HIV become a significant risk group for bone density decrease and injuries through accidents arising from that?

Like most medications, HIV treatments can have side effects. Some of these are still being discovered as people live longer on treatments. Some theories suggest that certain antiretroviral HIV medications are believed to be linked to bone disease. This includes the nucleoside reverse transcriptase inhibitorTenofovir (part of Truvada) and some protease inhibitors. Other theories suggest that the HIV virus itself causes an inflammatory reaction in the skeletal structure, by the release of chemicals known as cytokines that stimulate the bone to break down. Risk factors for osteoporosis tend to be more common in HIV patients as well (smoking, alcohol intake, reduced physical activity levels). There may also be additional risk factors which have not yet been identified. Again, as it is a relatively new study area in our group, not all is known at this point in time and research is underway to attempt to identify the causes.

It's probably important to point out that this is by no means confined to people living with HIV. In the general population, the risk of bone degeneration is greater in Asian and Caucasian women for instance, especially those who are "small boned." Furthermore, people with a family history of low bone density have a 50%+ greater chance of developing osteoporosis. Then you have the age factor: most people over 50 lose about 0.5% of bone mass each year. Lifestyle choices play a part too: smoking, poor diet, lack of vitamin D and calcium, alcohol or caffeine use and lack of exercise, are all contributory factors. Finally, long-term medication use; especially corticosteroids and anti-inflammatory drugs such as Prednison and hydrocortisone, increase the risk of bone damage.
So for all these reasons, if you are HIV positive, bone density loss may arise from another cause.

For the purposes of this article though, we should concentrate on what happens in HIV-related cases. Bone loss can come from long-term use of HIV meds but also the changes in the immune system as a result of those drugs. If HIV is ageing you more quickly than you would normally expect then logically, the chances of osteoporosis are going to be greater. Many people have a low body mass index due to the virus and drugs and this along with diabetes and hepatitis C, substance abuse and low vitamin D levels, will act negatively on your bone structure. Low testosterone in men and oestrogen in women can be a factor and it is suggested that people who have had a CD4 count below 200 may also be vulnerable.

So as you can see, there are reasons enough to be on guard against bone degeneration if you are living with HIV. However, the good news is that there are things you can do to minimise the effects and even the risk factors. The bad news (for some) is that most of these are based on regular exercise. Of course, it goes without saying that giving up smoking and over-use of alcohol are pretty much essential but I know personally that that's easier said than done. I heard on the TV that you never give up smoking; you just take long breaks in between and maybe that applies to drinking and recreational drug use too but you really have to try! Eating healthily is also a no-brainer and 10 to 20 minutes of sun every day will help increase your vitamin D levels (you can also supplement in the winter months.)

Now I know that for some people with fatigue issues, or neuropathy, the idea of having to exercise is not exactly welcome news but the alternative could be much worse. Bone density loss will increase your risk of falling and breaking bones; it will weaken you and negatively influence the activities you normally carry out.

Why exercise then? What good will it do?

Bone mass is not a static thing. Bone is constantly being built up and broken down during your life. This process is called "bone turnover." Weight bearing exercise, along with resistance exercise, challenges the bones to achieve a balance in the process. When you have osteoporosis (basically porous bones), or osteopenia (thinning of the bones), these two types of exercise will help balance the bone loss and restore density.

You don't have to have a gym membership to do these exercises. Any equal household weights will do. It's not the amount of weight that's vital, it's the resistance, so starting off using lighter weights is absolutely no problem. Lifting heavier weights does improve bone density more than using the light ones but the light ones have the advantage of being more easily moved and you can exercise with more pace. However, weights are just one way of doing resistance training.

Water also provides resistance, so swimming is a good way to exercise. If you're a good swimmer, maybe you can use paddles or weights on your feet and arms to make it just that little bit more difficult. The degree of resistance is then easily increased.

Cycling is another option. Pedaling uphill is an obvious resistance exercise but pedalling anywhere is a good start. As a rule of thumb, the greater the resistance, the greater the benefit.

In the same way, weights attached to your wrists and ankles (can be bought in sports stores) will help create resistance while you walk. We all have to walk, so this is an easy way to increase bone mass without really knowing it.

Hiking or dancing are also good exercises for resistance. I'm aware that some people may find even these activities too much but you do what you can do and every bit helps.

Still avoiding expensive gym fees, many things can be done at home, with or without the help of friends and partners. They sound horrible if you're not keep-fit inclined but sit-ups (with knees bent to avoid back strains) and push-ups (even standing up against a rail or balcony), are excellent resistance activities. Try each day to do one or two more than the day before -- you'll be surprised how quickly you get used to it. Remember, the only competition you're in is with yourself. You don't have to impress anybody with the amount of exercise you do but self-satisfaction is a great boost to your confidence and if you know your bones are getting stronger and you're getting fitter that must be a good thing.

In the '80s, isometric exercises were all the rage but they're perfect for increasing bone mass. Basically, it means pushing or pulling against an immovable force; so sitting in a chair and trying to lift the chair from underneath, or pushing against a wall, are great ways to do this sort of exercise. Even clasping your hands together and pushing with all your might, or even trying to pull them apart, will achieve resistance success (as well as helping with your chest and arm muscles). Do it consistently; don't jerk.

There are all sorts of weights available in the house. Try cans of food or bottles of drinks, or even bags of potatoes. They cost a fraction of the weights you can buy in a sports store and are just as useful, so long as you have equal amounts in both hands. Balance can be important when doing resistance work; you don't want to strain anything or put too much stress on joints or muscles. Do what's inside your comfort zone.

More high impact exercises will be very useful once you're used to the low-impact work. So everything mentioned above, at a greater intensity, or skipping, or running, or hopping, or even stair work (again, no expensive equipment required) will help improve the health of your bones.

What is vitally important is warming up and warming down. It sounds boring but it's also exercise, however gentle, to get your body ready for harder work later. If you don't do this, you run the risk of tearing a muscle or ligament and that will defeat the object completely, as well as maybe putting you off trying again. Gentle stretching for ten minutes either side of your exercise should be enough but remember, the harder you're going to work, the longer your warm up should be.

As a rule, the more resistance work you do, the greater the positive effect on your bones will be, but that doesn't mean putting yourself through torture every day. Two or three times a week, from 30 to 45 minutes, with a day's rest in between, will help greatly (although you can do more if you're up to it). The point is that exercise should never be something you dread; otherwise you may give up before having achieved much. There are many sites on the internet which will provide you with programmes if that's what you need and they will help you build up your exercise regime at a safe pace, but if in doubt, always consult a physiotherapist, or qualified sports instructor. Remember too, exercising to music can help the time fly and is much more fun (pick your own playlist).

Finally, it's human nature to resist exercise if you're feeling like hell already, so don't beat yourself up about it. Try to imagine your bones strengthening with each set of moves and if you want a scientific measure of your progress, ask your doctor to arrange a Dexa test (measures bone density) before you start and then again six months later ... you may amaze yourself. However, if you already know you have bone mass problems, you may have had that test, or others like it already.

If you're living with HIV, you don't need me to tell you how important exercise is. You know already that combined with healthy eating and avoiding too many other "unhealthy habits," you'll feel so much better both physically and mentally. Your bones however, have to carry you around until the day you die; if they're weak and lacking density, they may let you down at the most unexpected moments, with pain and hospital visits as a result. Don't see it as a wall to climb. Do everything in moderation (including exercise) and that will take you a long way.

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English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

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